On February 28th, I walked into Joseph’s elementary school wearing zebra stripes and toting enough Little Debbie Zebra Cakes to build a small fort. It was rare disease day, and we were going to talk about differences, about kindness, and about why the zebra is the perfect mascot for kids like Joseph, who has Batten disease.
What I discovered is that kindergartners are actually teensy little thought leaders.
Here are 7 lessons I learned from Joseph’s kindergarten class on rare disease day:
1. A room full of kindergartners can be as intimidating as an executive level meeting in a corporate boardroom. Don’t avoid eye contact. Do get your story straight. Be ready for honest feedback. There will be questions. So. Many. Questions. Avoid derailment – respond directly and circle back to the message. Teachers do this everyday. Eh? What do they put in their coffee that offers them this super ability to navigate so much concentrated energy? Every. Single. Day???
Quick Note: Thank you teachers, for your mastery of energy, joy, redirection and dedication. Our children are blessed by you. Every. Single. Day.
2. The sound of laughter from a single child with special needs, when echoed by the sound of celebration from his classmates, multiplies the sound of one angel singing into a choir of them. Heavenly, audible joy.
3. When you ask small children what makes a rare disease child different from them, they give you beautifully candid answers. “He has a wheelchair. He drools. His words sound different. His eyes don’t work.” Those answers as grown ups are avoided. We look away, and we don’t say things that are honest for fear that they sound hurtful. But as children, it is simple truth. And I will tell you as the mom of that rare child, it is an opportunity to share his unique beauty with another. Those candid statements hold no judgment, just honesty. If we could all be so real with each other, the world we live in would be unbounded.
Kindergartners should rule the world.
4. When you ask small children what makes a rare disease child the same as them, they celebrate the discovery. He loves music, and instantly they sing with him. He loves laughter, they all laugh with him from their bellies. He loves gentle kind words, and they offer them freely. He loves to be with you, and they surround him as warmly as a pile of puppy dogs. With joyful, judgment-free acceptance, they do what they have done all along.
Did I mention that kindergartners should rule the world?
5. Parents, teachers, and kids can come together as a community on a day called Rare Disease day, wear stripes to show support, and learn together how to celebrate the different challenges in life of few children. That same community can then turn the challenge of rare life into a celebration of differences, of unique beauty, and the special role special needs children play in our world. We learn together, and we watch hope rise as effortlessly as laughter.
6. Every child wants a kindness badge, and when offered one they will wear it proudly, and share it with the world. I would highly recommend introducing them to it.
7. Next Rare Disease day, and the next, and the next, I will be grateful for the chance to share again in the celebration of our rare kids, and the extra amazing kindness of each and every one of our children. There is so much beautiful hope in this world, especially knowing that one day soon, the kindergartners will run the place.
Special thanks to the Joseph’s school staff, ACE team, parents Elisha and Jess, the Kindness Badge authors, and the parents who are raising these amazing kiddos to be kind, and be inclusive. You are awesome.
